parent to parent peer support for parents of children with a disability a mixed method study

Accepted ManuscriptTitle: Parent-to-parent peer support for parents of children with a disability: A mixed method study Authors: Lucy Bray, Bernie Carter, Caroline Sanders, Lucy Blakea,

Accepted Manuscript

Title: Parent-to-parent peer support for parents of children

with a disability: A mixed method study

Authors: Lucy Bray, Bernie Carter, Caroline Sanders, Lucy

Blakea, Kimberley Keegan

This is a PDF file of an unedited manuscript that has been accepted for publication

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Parent-to-parent peer support for parents of children with a disability: A mixed method study

Dr Lucy Bray 1, 2 brayl@edgehill.ac.uk (corresponding author)

Professor Bernie Carter 2, 3 bernie.carter@edgehill.ac.uk

Dr Caroline Sanders 2, 3, 4 Caroline.Sanders@unbc.ca

Dr Lucy Blake1 lucy.blake@edgehill.ac.uk

Kimberley Keegan, 2, 4 k.keegan@lancaster.ac.uk

1 Faculty of Health and Social Care, Edge Hill University, Ormskirk, UK

2 Children’s Nursing Research Unit, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

3 Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

4 University of Northern British Columbia, Canada

Highlights

 Parents of a child with a disability can experience high psychological distress

 Peer parenting support is valuable in fostering personal growth

 Befrienders act as catalysts to nurture supportive meaningful relationships

 Befriending positively influences parents’ psychological and emotional wellbeing

Abstract

Objectives: This paper will report on the findings of a study which investigated the influence of a

befriending (parent-to-parent peer support) scheme on parents whose children have a disability or additional need The scheme operated from an acute children’s tertiary setting in the UK

Methods: A prospective concurrent mixed method design collected Interview (n=70) and

questionnaire (n=68) data at two time-points from befrienders (n=13) and befriendees (n=26)

Results: The main qualitative findings of the study relate to the different degrees parents

(befriendees and befrienders) moved from being lost, to finding and being a guide and getting to a better place The quantitative findings demonstrate that parent-to-parent peer support has a

positive influence on parents’ levels of psychological distress and their ability to cope with being a parent of a child with a disability

Conclusion: The befriending scheme acted as a catalyst for many parents to move towards a place

where they could grow and begin to flourish and thrive

Practice Implications: Professionals should inform parents who have a child with a disability that

peer-to-peer parenting support schemes are a valuable and appropriate source of support and help

Keywords: Parent; peer to peer parenting support; befriending; parent well being; disability

1 Introduction

Being the parent of a disabled child or a child with a chronic lifelong health condition goes beyond

‘ordinary’ parenting [1] and can increase the risk of family relationship problems, stress and

depression (Contact a Family www.cafamily.org.uk) Although having a disabled child will not

inevitably lead to family difficulties [2], evidence suggests that parents experience exhaustion, stress [3], feelings of isolation, loneliness [4], disempowerment and social marginalisation [5,2]

The support for parents caring for a child with a disability or long term condition can concentrate on specific needs or medical treatment (Solomon et al 2001) Parent-to-parent peer support has existed since the 1920s, and aims to offer holistic parent centred support [6, 7] Peer support for parents can

be of particular value during specific stressful health care episodes, for example, at diagnosis of a

disability or chronic condition [8]

Shilling et al.’s [9] systematic review of the benefits of peer parenting support schemes on parent’s health, well-being, impact on family, and economic and service implications concluded there were four consistent themes that influenced parent experiences: social identity; learning from the

experiences of others; personal growth; and supporting others Such parenting support schemes can promote emotional support (including sharing of feelings) [9], social and practical support [10, 11, 6, 12], coping models, problem solving skills, and empathetic understanding [13, 2] These schemes also aim to facilitate the feeling of social companionship, belonging and community with other parents, reducing feelings of isolation [12], enabling the sharing of ideas and strategies to cope with common problems [4] and enhancing self-efficacy [2, 14] Apart from one study [15] which

demonstrated significantly lower maternal stress, depression and anxiety in mothers of preterm babies who received parent-to-parent support compared with those who did not, Shilling et al [9] highlight that there remains a lack of robust quantitative evidence on the psychological, emotional and other health outcomes of parent-to-parent support

Most parent-to-parent peer support occurs and has been studied within community-oriented

settings, these evaluations demonstrate the parents’ perceived benefits of such schemes [9] There have been no studies aiming to quantify the influence of peer support schemes on parents of

disabled children within an acute paediatric tertiary setting The research question underpinning this investigation was what is the influence of the parent-to-parent peer support scheme on parents’ wellbeing?

1.1 Background to the parent-to-parent peer support scheme

The parent-to-parent peer support scheme (Face 2 Face) is co-ordinated by Scope, a UK-based charity The scheme aims, through sessions of peer support, to help parents of disabled children understand their feelings about their child’s disability, make positive changes to their own and their family’s lives and promote parental mental health and wellbeing Parent volunteers (befrienders) undertake 8 sessions of training which include non-verbal communication, body language, how to build trust in the befriending relationship, boundaries and visiting procedures, keeping themselves safe and being aware of difficult feelings The befrienders then engage in six to eight, one-to-one support sessions (often spread over 3-5 months) with their allocated befriendee (parent seeking support) The sessions occur in the befriendee’s home setting although some befriendees choose a venue outside of their home The parent (befriendee) is supported to talk through their feelings, reflect on their strengths, identify challenges and search for solutions The trained befrienders are supported by a regional co-ordinator and attend regular group meetings during the timeframe they are befriending a parent Scope runs peer-to-peer parent support schemes in community based settings in different geographical areas across the UK; prior to this project the scheme had not operated within an acute paediatric tertiary setting

2 Methods

2.1 Research Aim

The study aimed to examine the influence of the parent-to-parent peer support scheme on parents’ (befriender and befriendee) wellbeing and their ability to deal with the day-to-day circumstances experienced when parenting a disabled child

2.2 Design

A prospective concurrent mixed method study design [16] was adopted with baseline and follow-up data collected to assess any changes occurring over the course of the scheme Qualitative interview data and quantitative questionnaire data aimed to provide different but complementary sources of evidence with all sources of data being afforded equal priority in the collection and analysis process [17]

Data were collected at the beginning of the scheme (TP1) (several weeks before the befriending commenced), and within several weeks of the parents finishing their befriending experience or the point at which they left the scheme early (e.g., unable to continue with sessions due to change in circumstances) (TP2)

2.2.1 Questionnaires

Care was taken when selecting the questionnaires not to over burden parents Three validated completion questionnaires were administered to parents (befrienders and befriendees) at the beginning and end of their befriending relationship: the Pediatric Inventory for Parents (PIP) [18]; the Peds QL™ Family Impact Module [19]; and the General Health Questionnaire-12 (GHQ-12) [20] (see Table 1 for further information)

self-The researcher was present during completion of the questionnaires, but was not normally involved

in administering the tools If the parent needed help the researcher read the questions and available responses to them in a clear and non-directive manner and their verbal responses were

documented

2.2.2 Interviews

Qualitative, audio-recorded semi-structured interviews, conducted within the parents’ home or at

an agreed setting, were conducted at the beginning and end of the scheme The interview

conducted at the beginning of the scheme explored befrienders’ and befriendees’ prior experiences

of support, why they had chosen to engage in the befriending scheme and their expectations of befriending The second interview examined the befriendees’ and befrienders’ experiences of the befriending process, the logistics of meeting with their paired parent, perceived influence of the befriending and what could have worked better (see Table 2 for further detail)

2.3 Sampling and recruitment

All parents (befrienders and befriendees) who engaged in the scheme were invited to participate and given a research pack by the scheme co-ordinator, which included the contact details of the research team The research team did not have access to any parent’s details until they contacted the team to express an interest in taking part in the study

2.4 Ethical considerations

Ethics approval was obtained from the West of Scotland Research Ethics Service (12/WS/0065) and research approval was granted by the recruiting NHS Foundation Trust Research and Development Department All participation was voluntary Written consent was obtained at the start of

participation and re-affirmed at every point of contact A ‘Research Concerns Protocol’ was

developed in partnership with the psychology department at the tertiary centre to identify concerns and appropriate actions to be taken by the researchers (e.g concern raised by parents; high GHQ-12 score)

2.5 Analysis

In line with the concurrent mixed method design, the interview and questionnaire data were initially analysed as separate sources of evidence before being compared, contrasted and synthesised during the process of data interpretation Interpretation was an iterative and collective process engaging each member of the research team The interviews were interpretively thematically analysed [21] by all members of the research team The data were coded inductively line-by-line, then labels were ascribed to segments of text Four researchers (xx,xx,xx,xx) independently coded five transcripts line-by-line (20 in total) before meeting as a team to discuss and gain some consistency of the codes Each of the remaining transcripts was coded independently by two members of the team The codes and ascribed labels were discussed and debated between the research team to reach consensus and consistency prior to the development of the three main themes The questionnaires were coded, inputted and analysed using descriptive and inferential statistics within a statistical package (SPSS)

3 Results

The scheme ran between May 2012-June 2014; 70 interviews (lasting 10-80 minutes) were

conducted and 68 sets of questionnaires completed (see Table 2) The scheme trained 13 parent befrienders (12 mothers; 1 father) who all engaged in the research project Due to personal

circumstances only 12 befrienders went on to befriend a parent and were interviewed at the end of

their befriending experience Thirty-four befriendees engaged in the scheme and 26 (24 mothers; 2 fathers) participated in the research study The number of sessions held between a befriendee and their befriender ranged from 2-12; the number of sessions was intended to be flexible and

responsive to the individual needs of each befriendee

The children of the befriendees and befrienders had a range of conditions and disabilities (Table 3) Although we asked the parents for their child’s main diagnosis, we did not request more detail about their child’s condition such as length of time since diagnosis or other demographic data as our focus was on the befriending relationship, regardless of the child’s condition

The findings will be presented in two sections; the qualitative findings and the quantitative findings

3.1 Qualitative Findings

The qualitative data are presented within the three themes of ‘being lost and not knowing which way to turn’, ‘finding or being a guide’ and ‘getting to a better place’ These three themes were developed based on our iterative interpretation of the data and the sense of a journey (before-during-after befriending) that was evident in the stories the befrienders and befriendees recounted The codes and how these relate to the themes and the points of engagement with parents are presented in table 4

3.1.1 Being lost and not knowing which way to turn

This theme was dominated by the befriendees’ accounts, although befrienders often began their interviews recalling their own stories of feeling lost and the personal impact of their child’s

diagnosis The following befriender reflected back on her emotional reaction to hearing her son’s diagnosis

“I was in a lot of pain and it felt like physical pain to me because I felt like

someone had punched me in the face or ripped my heart out or like picked my

world up and shoved it upside down, rolled it around a few times and went –

‘Here you are’” (Befriender 8, before befriending)

Many of the befriendees were early in their journey of understanding their child’s condition, some

still awaited a definite diagnosis, and many described themselves as having reached “rock bottom”,

“being in darkness”, “not knowing which way to turn” and not being able to see the “light at the end

of the tunnel”

While many parents felt supported by health professionals, both befrienders and befriendees

described how professionals focus on providing physiological information Parents consciously

presented themselves as being “fine” during these interactions as they feared the consequences of being judged as “unable to cope” The following mother discussed the risk she believed was inherent

in being open with professionals;

“There are times when you feel overwhelmed by it You feel that when the

attention is on you, when they say to you – ‘how are you getting on?’ you’ve got

to go ‘I’m fine’ because if you don’t say ‘I’m fine’ what are they going to say

next?” (Befriendee M, before befriending)

Acting “being fine” meant that parents who needed support, did not reveal this, further reinforcing

their isolation Although many had supportive families and friends, they were often guarded about sharing sensitive or upsetting information with them One mother expressed how her family had exacerbated her fears of losing her children if she admitted struggling

“My mum is very old school, very sort of ‘don’t air your dirty laundry’ you know –

‘if you start telling people you are worried… you’ll have social services involved

and they’ll take the children off you” (Befriendee O, before befriending)

Befriendees’ concerns about the dangers of “letting down their guard” reinforced the idea that they

should just try and “get on with it” and not openly acknowledge that they needed help or support

3.1.2 Finding or being a guide

4.1.2.1 Being a guide

Despite heartache persisting in the lives of some of the befrienders, they discussed how they had learnt strategies to cope and overcome daily challenges They were able - in most cases - to look back

and see where they “had come from” and the journey they had taken Several befrienders hoped that

by sharing their experiences they would be able to help other parents navigate the emotionally

difficult times that can be associated with being a parent to a disabled child As one mother explained:

“… when you go to that mum’s house and you say to them ‘I’ve been where

you’ve been’ and they look at you and think ‘well you’re normal, you’re just a

normal person and if you can do it, I can’ And that inspires that mum to think,

‘well if that person can do it, I can do that, you know I can achieve that’”

(Befriender 8, after befriending)

Befrienders recognised that they needed to be “in a positive, strong place to be able to support

someone else” as hearing other parents’ worries and fears sometimes emphasised the issues they were continuing to experience They noted befriending “makes you assess your befriendee’s world but also your own” (Befriender 7, after befriending)

3.1.2.2 Finding a guide

The need to talk to someone who had “been there” was the most frequently cited reason that

befriendees had sought support and chosen to engage in the scheme Several of the befriendees described this mutual support as lifting them through periods of feeling very low, for example:

“I was just so low you know at that point and having someone there really pulled

me through When I think back now how low I was, because we weren’t leaving

the house even, and I wasn’t really getting any support from my family or

friends, they couldn’t really understand.” (Befriendee AF, after befriending)

Befriendees had to find time in their busy lives to meet with their befriender and this was

challenging especially when trying to balance other commitments such as work, shopping, cleaning and child care responsibilities One befriendee, who discontinued befriending after several sessions, discussed how she had struggled to make time to meet with her befriender:

“I had too much going on I’ve got nurses coming from LD [learning disability]

every week, speech and language some, he’s in school three hours and I’ve got

housework to do and shopping so I just didn’t have the time to do it.”

(Befriendee I, after befriending)

3.1.3 Being in a better place

Many of the befriendees’ accounts following befriending included descriptions of how they felt that

they had reached a “better place” Although many continued to experience high levels of distress and difficulty they described they had “moved forwards” and “come out the other end of the tunnel”

Being able to honestly share experiences and emotions encouraged one mother to explore positive

aspects of her life and how she could move forward towards having a “good life”:

“Because at first you start thinking that your life’s over and ‘oh God it’s awful’ but that’s what I mean it helped me talking to her because I realised well no, you can still have a

good life and have relationships and get out to places and things like that” (Befriendee

F, after befriending)

One befriender described passionately the difference she had witnessed in one of the parents she had supported:

“To see her from the start she’s a completely different woman When I found her she

was on the floor and by the time I finished she was a completely different woman and it was amazing to see…….Because that’s all I want to do, put her in a better place than

what she is when we find her” (Befriender 8, after befriending)

As a result of engagement in the scheme many befrienders expressed a sense of fulfilment and achievement in their role, as described by the following mother:

“Yes I feel good about it, I feel like I’m doing something you know, because I had closed

myself off I feel I have accomplished a helluva lot through doing the Face 2 Face”

(Befriender 4, after befriending)

The majority of befriending relationships which ran to completion met more than the expected six to

eight meetings, as this proposed limit was felt to be “not enough” to really move a befriendee

“forward” Befrienders suggested their befriendee was not in a “good enough place” to be left

unsupported at the proposed exit point Many in the scheme continued to meet beyond the formal befriending experience, sometimes offering reciprocal guidance and support and with both being in

a “better place” than which they started

As shown in Table 6, data from the GHQ-12 collected before befriending indicated that the

befriendees were living with high levels of psychological distress (mean = 20.15, SD = 6.18).There was an improvement in the average GHQ-12 score of the befriendees from TP1 (M = 20.15, SD =

6.18) to TP2 (M = 13.75, SD = 8.99) and this difference was statistically significant: t (19) = 2.656, p =

.016 Some befriendees continued to experience challenging personal circumstances relating to relationships with partners and family and housing difficulties and these parents continued to score very high on the GHQ-12 for psychological distress

The befrienders average GHQ-12 scores likewise improved from TP1 (M = 12.50, SD =6.64) to time

point 2 (M = 9.82, SD =5.67), and this difference was marginally significant (t (9) = 2.041, p = 072)

3.2.2 PIP

For both befriendees and befrienders, PIP-D and PIP-F scores lowered over the course of the

befriending scheme The PIP assesses parents’ stress related to caring for their child with an illness The befriendees PIP-D scores were higher before the befriending scheme began at TP1 (M = 126.73,

SD = 19.67) compared to their score when the befriending scheme had ended at TP2 (M = 102.30, SD

= 33.01) The difference in scores between the two time-points was statistically significant: t (19) = 2.190, p = 041 Likewise, the befrienders PIP-D scores were significantly higher at TP1 (M = 115.20,

SD = 39.47) compared to TP2 (M = 81.00, SD = 33.68) (t (9) = 3.654, p = 005)

PIP-F scores likewise decreased over time for both befriendees and befrienders For befriendees, the difference in scores between TP1 (M = 124.42, SD = 23.61) and TP2 (M = 105.30, SD = 29.84) was not statistically significant: t (19) = 1.49, p = 152 However, for befrienders, the difference in scores

between TP 1 (M = 111.30, SD = 32.84) and TP2 (M = 86.82, SD = 30.21) was statistically significant: t (9) = 2.667, p = 026.

3.2.3 Peds QL Family Impact Module

The summary score for the HRQoL element of the Peds QL was examined as the main metric from the Peds QL scale For both befriendees and befrienders, scores improved between TP1 and TP2 The Peds QL Family Impact Module assessed Health Related Quality of Life and Family Functioning

Befriendees scores improved from TP1 (M = 34.83, SD = 13.58) to TP2 (M = 44.64, SD =16.26),

although this difference was not statistically significant (t (19) = -1.675, p = 110) For befrienders,

scores likewise improved from TP1 (M = 48.75, SD =26.09) to TP2 (M = 54.58, SD =27.82), and again

this difference was not statistically significant (t (9) = -.800, p = 44)

4 Discussion and Conclusion

4.1 Discussion

The findings from the qualitative and quantitative data led the research team to examine concepts underpinning parents’ personal growth and journeying through adversity from ‘being lost’, ‘being or finding a guide’ and ‘getting to a better place’ These inductively derived themes are explored in this discussion by being framed within a surviving and thriving trajectory; this trajectory facilitates the examination of how people cope and respond to challenging circumstances and life transitions [22,

23] The parents in this study (both befriendees and befrienders) faced many challenges and life transitions including dealing with their child’s diagnosis, managing day-to-day with a child with a disability or additional need, maintaining family life and work commitments, and dealing with

unexpected changes to their child’s condition and family circumstances We will discuss how the befriendees and befrienders in this study presented as surviving and thriving as part of a nuanced and complex journey

Before befriending, many of the befriendees could be seen to be ‘just’ surviving and were

experiencing high levels of psychological distress and difficulty Isolation, personal struggles, feeling

‘stuck’ and not knowing where to turn for help were reinforced by the perceived need to present themselves as ‘being fine’ to family, friends and professionals Although these parents were

surviving, they seemed to be diminished by their experiences and the challenges they faced; in some cases they described their ongoing journey as insurmountable as they could not envisage an end to their struggles These descriptions reflect Bergland and Kirkevold’s [22] notion of ‘surviving’ where a person is impaired as a result of exposure to stress or adversity The parents who were described being ‘lost not knowing which way to turn’ reflected key ‘surviving’ traits identified in the literature

as ‘managing to continue to live and exist’ [24] whilst ‘struggling to cope’ [22] Not all the

befriendees’ experienced the same levels of adversity as there was variation of emotional and psychological wellbeing scores pre-befriending (TP1) However, most befriendees talked in terms of

‘living less than a full life’

Despite many of the befriendee parents describing how they managed to ‘just get on with it’ and survive day-by-day, they contacted the peer parenting support scheme as they endeavoured to improve their circumstances The befriendees who engaged in the scheme were guided by their befriender to look beyond day-to-day survival, to consider what may be acting as barriers for them

in changing or coping better in their lives and begin to see opportunities to overcome and face these challenges Despite many of their life circumstances remaining the same, the befriendees began to see possibilities for how they could flourish, grow and thrive The concept of thriving [22] reflects

‘growth and greater well-being’ [25] and indicates a person feels able to ‘flourish’ [23] following exposure to stress, suffering or challenging circumstance(s) The befrienders also thrived, flourished and developed through their interactions with the scheme, despite many continuing to experience difficult circumstances Becoming a befriender seemed to open up further opportunities for

continued growth, personal fulfilment and could be described as ‘fully thriving’ [23] in that they were functioning well in the face of adversity whilst at the same time pursuing meaningful life opportunities

The ability of parents to share their feelings, worries and anxieties with another parent who had travelled a similar journey and had ‘been there’ was described as the most important characteristic

of the support scheme Befriending facilitated and fostered the befriendees’ growth and they were able to thrive through the supportive meaningful relationships which Feeney & Collins describe as a key element in promoting thriving [23, 26] Within our study the befrienders nurtured the

befriendees’ desire for growth and their ability to see life’s opportunities In this way they acted as a relational catalyst [23], as identified within Feeney & Collins model of thriving The social

connections developed during befriending enabled both the befrienders and befriendees to discuss